This Is MS Multiple Sclerosis Community: Knowledge & Support

[finn]

Sorry, time to leave the board.

-finn

[2gentle]

Finn,
Thank you so much for posting this, and I wish ALL in the trials, the very best!!

Even tho, I'm a bit skeptical , I DO so much want this to succeed!
Thanks again, and be well,

[Aikika]

After exposure in the Daily Mail (UK), the Daval world has gone haywire. Everyone wants Aimspro (Caprivax) and those of us on the bandwagon have had an interrupted service.
Phone lines have been very busy this week and after a series of calls, I'm now hopeful that I will remain on their patient list.

Is it really a cure?
I can't really say.
Those inside Daval believe they've hit it big and anyone with money to invest blah, blah, blah. They were saying the same a year ago.
But it's hard to deny the testimonies of those who've found relief. They just don't include me - as yet.

[AnnW]

Aikika - I had a telephone call from Daval today and they will be delivering a month's supply of Aimspro to my front door on Friday. Home delivery will be a lot easier for you rather than having to travel all the way down here won't it. Hopefully your new doctor will be much nearer to your home as well.

Ann

[Guest]

Would anyone know the phone number to contact to join these trials?

Aikika if you can help, I would be most grateful.

Many thanks.

I've been on these trials for a month now and I thought others might want to know about it. You can find information about the 'product' on this site- just type Caprivax into the search section.
Don't ask how I got to hear about it - friend of a friend type of thing.
Anyway from my home in Sheffield (UK), we - my partner Lorraine and I -have had to travel the 500 mile round trip to Kent for the first few injections (once a week). Last week the doctor gave me three weeks supply so I could self medicate.
On our first visit we met a number of MS sufferers, most of whom reported significant improvements in their conditions including one woman who was 'chair bound' before beginning the treatment. The organisation involved also produce a DVD featuring up to twenty people whose lives have been turned around by this new wonder treatment.
I would like to report changes in my condition but nothing as yet. Early days? We shall see.

[/quote]

The trials in Kent are I am told closed, but the formal trial at St Georges Hospital, may still be open.

Contact details according to the new patways article are

Dr David Barnes, Consultant Neurologist,

Atkinson Morley Wing,
St Georges Hospital,
Blackshaw Road,
Tooting,
London,
United Kingdom.
SW17 OQT.

TRIAL NURSES.

Michelle Hollow
Christine Gregory
0208 725 4162

Good luck

[Aikika]

Waited in all day Friday for delivery of months supply of Aimspro but somehow I got missed out - some cock-and-bull story about mis-reading the post-code, but on Saturday a nice man travelled all the way from London to deliver it.
What was that George Elliot said about unhistoric acts?!!!
Hope you had no troubl Ann.

[AnnW]

Peta

Mine turned up at 7.30pm on Friday evening - no worries . Glad to hear yours also turned up OK albeit on Saturday. Those chaps do seen to be working their socks off getting the deliveries to everyone.

I am going through a plateau stage at the moment - not going back, but not getting ant further forward either. I am impatient by nature and want everything right now, but I suppose MS crept up on me over a period of years and it's not going to disappear overnight .

I can't complain too much though, I was pushing the lawnmower last week for the first time in 2 years . Little steps, I suppose

Ann

[David]

My wife Wendy, a sufferer for almost 10 years, and a user of beta-interferon for the last 3, has just been invited to a meeting tomorrow in Kent. As the beta-interferon has not prevented her relapses, we're taking this very seriously.
Any advice - either positive or negative - from others who know more than we do currently, such as triallists or those investigating it?
Feel free to e-mail us direct on wendy.lennon@ukonline.co.uk, also any questions you'd like raised on your behalf.
If successful we'll be sure to share our feedback and agitate for quicker, wider availability.

[Isabella]

I have been reading this all the way through and I am hoping that this will become available someday, I just can't understand how somebody can say they are in a plateau stage and then in the same breath say they have been pushing a lawnmover for the first time in 2 years, I sure wish I could. to me any little improvement with MS is a step in the right direction. Would this have happened without the treatment, I do wonder.......Maybe I too will find out one day.

[AnnW]

Isabella - what I meant was that I saw a big improvement straight away, but now it seems to have got stuck at this level - does that make sense?!! Anyway, I am very happy with how I am now, but would be only too happy if I were to improve again, which I am told is more than possible .

Ann

[finn]

Sorry, time to leave the board.

-finn